Redefining Disability Week 3: Experiences with Medical Treatment/Therapy

27 Jan 2015 Ruth L Snyder

Disability and medical

Our experiences with medical treatment and therapy have been varied. I would say the “human” factor makes the biggest difference. Some doctors and therapists detach themselves and only dispense medicine and knowledge. Others genuinely care about those they are treating. They laugh with you and cry with you and cheer when there is progress. When one of these individuals moves on, you go through a grieving process. Here’s a summary of our experiences:

  • The first pediatrician who saw our twins said they would never walk, talk, or feed themselves. Perhaps he was merely trying to prepare people for the worst case scenario? Thankfully his prediction proved to be false.
  • The pediatrician who became our family pediatrician told us he wasn’t sure what the twins were capable of, but he committed to being with us each step of the way. He not only provided information, but he also gave helpful referrals and filled out copious amounts of paperwork to ensure they received necessary services.
  • Our pediatric ophthalmologist is a gem. He used sound effects and animated stuffies to help with examinations. He took his time and always made sure our questions were answered before he said goodbye. He cautioned us to be careful about making appointments in the winter, knowing that we traveled a few hours to see him. When he retired, he let us know and made sure someone else was there to take care of us.
  • The first speech therapist we were referred to knew less than we did about how to help our boys. We were told he could help us with the feeding issues one of our twins experienced. The best thing he did was admit he had no clue how to help us.
  • After enduring many speech therapy sessions that were a waste of time, we finally found someone who did more than diagnose problems. She taught us how to play with purpose by getting down on the floor with our twins and building a relationship with them. She not only told us what to do, but explained the reason behind it.
  • It took many phone calls and conversations before I located an occupational therapist who was willing to travel to us. He was honest about the rules which most people played by, but told us he would help in whatever area he could. He only did assessments when they were required for funding or some other useful purpose. Otherwise, he spent his time watching, listening, joking with the boys, and offering a professional sounding board for our family. He also made himself available for many phone calls and e-mails. To this day I know that I can ask for his opinion. I know he’s there for us.
  • My first encounters with special education were not positive. I discovered a system that was more about rules and money than about meeting the needs of unique individuals. Thankfully, I met other parents with more experience who helped me learn the ropes. (I chose to serve on our local school board for six years because I believed I could make a difference for other children and their families.) We also worked with some very caring teachers and educational assistants. People who were willing to go beyond the call of duty to make sure needs were met.

I’m thankful for the many amazing professionals we’ve interacted with on our journey. It truly does take a community to raise a child, especially when the child has unique needs.

What do you look for when you need medical intervention or therapy? What have your experiences been like?


 

redefining-disability1

Last year Rose Fischer started a Redefining Disability Challenge. This year she is continuing to invite people to join the challenge by blogging about a set of questions she developed. I’ve decided to join this challenge and most Mondays (or Tuesdays!) will be answering one of her questions.

5 thoughts on “Redefining Disability Week 3: Experiences with Medical Treatment/Therapy

  1. Avatar
    Kerry at Her HEadache

    This is great. Another look at these issues from the parent’s point-of-view.
    You remind me of my own mother, who fought very hard for equal education and rights for myself and my brother, both born blind.
    The world could use more parents like mine and like you, from what I read here.
    Thank you for all you do.
    I like to think my mother would have a blog like yours, if the internet had been around when my brother and I were growing up.
    I look forward to reading your blog in the future.

    1. Ruth L Snyder
      Ruth L Snyder

      Kerry,
      Thanks for stopping by. I’m glad you had a mother who was a strong advocate. I’m discovering there are many children who don’t have the advocacy they need. I look forward to getting to know you better 🙂

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